Transcript Euthanasia Talk Ezekiel J. Emanuel, M.D., Ph.D.

End of Life: Ethics,
Dilemmas, and
Decisions
Ezekiel J. Emanuel, M.D., Ph.D.
End-of-Life Care: USA
• Most people are very dissatisfied with
end-of-life care in the USA.
•
•
•
•
Too impersonal and undignified
Too often in the hospital not at home
Too often attached to machines
Too expensive
End-of-Life Care: USA
“[End of life care in America] is all about extracting the
last dime first from private wealth …until all excuses run
out and the patient is finally and mercifully allowed to
die.
Not only has the system gradually turned into a gigantic
financial racket that plays on people’s normal sense of
wanting to prolong life as much as possible; it is the
cause of wrecked families, massive heartache and
terrible suffering spread far and wide, not to mention
pillaged family estates.”
-Jeffrey A. Tucker, Fellow of the Foundation for
Economic Education
End-of-Life Care: USA
"…The health care system is poorly designed to
meet the needs of patients near the end of
life...The current system is geared towards
doing more, more, more, and that system, by
definition, is not necessarily consistent with
what patients want and is also more costly.”
-David Walker, Co-Chair of the IOM Committee on
“Dying in America”
End-of-Life Care: USA
• 80% of patients with chronic diseases
want less aggressive end-of-life care.
• 70% of Americans would prefer to die
at home.
End-of-Life Care: USA
80
70
60
50
2000
40
2005
2009
30
20
10
0
Hospitalization in the last 90
days
ICU in the last 30 days
Mean ICU days in the last 90 Mean hospice days in the last
days of life
90 days of life
End-of-Life Care: USA
• Roughly 25% of Medicaire spending for
health care is for the 5-6% of
beneficiaries who are in their last year
of life.
• This totals to almost $150 billion.
End-of-Life Care: USA
• Is this picture of end-of-life care in the
USA true?
End-of-Life Care: USA
• Some areas of improvement:
 Significantly fewer deaths in hospital.
 Significantly greater use of hospice
for longer.
End-of-Life Care: USA
Percent of Deaths in an Acute Care Hospital
35
30
25
20
15
10
5
0
2000
2005
2009
Four Questions About End-ofLife Care
• Is this picture limited to the USA?
• What is the right picture about current
end-of-life care practices?
• Can euthanasia and PAS improve endof-life care?
• What can be done to improve end-oflife care?
End-of-Life Care Worldwide
“As a Scottish-Canadian-Californian, I have always said
that I have a unique perspective on health care and all
things to do with health care, including death and dying:
The Scots see death as imminent. Canadians see death
as inevitable. And Californians see death as optional...
Americans and the American health care system are
uncomfortable with the inevitability of mortality.”
-Ian Morrison, President Emeritus of the Institute for the
Future
End-of-Life Care Worldwide
• When it comes to
death the USA is often
viewed as “peculiar”.
Death optional.
• Is this picture of endof-life care limited to
the USA?
• Is this picture true of
Australia? Europe?
End-of-Life Care
• Limited comparative data on end-of-life
care.
• But what we have suggests the USA is
not “peculiar” or unique when it comes
to end-of-life care.
End-of-Life Care: Australia
• In last year of





Percent with ER visit:
70.0%
Mean number of ER visits:
1.9
Mean number of hospitalizations: 7.6
Mean number of days per
hospital stay:
5.6
Deaths in hospital:
61.5%
(Limited to Perth)
Change Points for Hospitalization
in the Last Year of Life in
Australia
Medical Journal of Australia
End-of-Life Care: Worldwide
• There is a disconnect between
preferences and site of death.
• Many patients with cancer die in the
hospital in other developed countries.
End-of-Life Care: Worldwide
Percent Preferring to Die at Home
90
80
70
60
50
40
30
20
10
0
England
Flanders
Germany
Italy
Netherlands
Portugal
Spain
Annals of Oncology
What is the Truth About Endof-Life Care?
Place of Deaths in Noncancer
and Cancer Occurrences
100
90
80
70
60
Noncancer
50
Cancer
40
30
20
10
0
Belgium
Netherlands
Norway*
England
*In the Norwegian death certifications, institution was used a category,
without a distinction between care home and hospital
Wales
Journal of Clinical Oncology
Comparison of End-of-Life
Resources
Countries:
1. Belgium
2. Canada
3. England
4. Germany
5. Netherlands
6. Norway
7. United States
Disease: Cancer
Year: 2010
Death in an Acute Hospital
60%
50%
40%
30%
20%
10%
0%
Hospitalization in the
Last 180-Days of Life
100
90
80
70
60
50
40
30
20
10
0
Belgium
Canada
England
Germany
Netherlands
Norway
United States
ICU Admissions in the Last
180-Days of Life
45
40
35
30
25
20
15
10
5
0
Belgium
Canada
England*
Germany
Netherlands
Norway*
United States
*Data is not available for
England and Norway
Chemotherapy in the Last 180Days of Life
45
40
35
30
25
20
15
10
5
0
Belgium
Canada
England*
Germany
Netherlands
Norway
United States
*Data is not available for
England
Costs in the Last 180 Days
Mean Per Capita Hospital Expenditures
25000
20000
15000
10000
5000
0
Belgium
Canada
England*
Germany
Netherlands
Norway
United States
Hospitalization in the
Last 30-Days of Life
70
60
50
40
30
20
10
0
Belgium
Canada
England
Germany
Netherlands
Norway
United States
ICU Admissions in the Last
30-Days of Life
12
10
8
6
4
2
0
Belgium
Canada
England*
Germany
Netherlands
Norway
United States
Chemotherapy in the Last 30Days of Life
14
12
10
8
6
4
2
0
Belgium
Canada
England*
Germany
Netherlands
Norway
United States
*Data is not available for
England
Costs in the Last 30 Days
Mean Per Capita Hospital Expenditures
10000
9000
8000
7000
6000
5000
4000
3000
2000
1000
0
Belgium
Canada
England
Germany
Netherlands
Norway
United States
Cost and Deaths at End-of-Life
End of Life Care Isn’t Great
Anywhere
End-of-Life Care: Worldwide
• The USA is not the worst and is not
peculiar.
• All developed countries are not
providing optimal care.
• But there have been improvements. A
reason for hope.
Can Euthanasia and Physician
Assisted Suicide Improve
End-of-Life Care?
Euthanasia and PAS
• Many people believe the solution to
bad end-of-life care is euthanasia and
PAS.
• These interventions are
 Painless
 Flawless
 Quick
Definitions
• Euthanasia:
When a physician or someone else
administers a medication, such as
sedative and neuro-muscular relaxant, or
other intervention, to intentionally end a
patient’s.
Definitions
• PAS:
When the physician—or someone else—
provides medication, a prescription, or
other intervention to a patient at his or her
request with the understanding that the
patient intends to use the medications or
other intervention to end his or her life.
Legal Status: Worldwide
Public Opinion
• Framing effects on the polling.
• Wording of the question makes a big
difference.
Public Opinion
US Public Support for Physician
Assisted Death (PAD)
VAE (Gallup): “When a person has a disease that cannot be cured, do you think doctors should be allowed
by law to end the patient's life by some painless means if the patient and his family request it?”
VAE (General Social Survey): “When a person has a disease that cannot be cured, do you think doctors
should be allowed by law to end the patient's life by some painless means if the patient and his or her family
request it?”
PAS/PAD (Gallup): “When a person has a disease that cannot be cured and is living in severe pain, do you
think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient
requests it?”
Note: Margin of sampling error = +/-4% for Gallup; +/-3% (roughly) for
General Social Survey
Public Support: USA
• Stronger support among
 Men
 Non-religious
 Better educated
Public Support: Australia
• “Terminally ill patients should be able to
legally end their own lives with medical
assistance”
74% of Australians agree
Public Support: Europe
Question: Please tell me whether you think euthanasia (terminating the life of the incurably sick) can always be justified, never
be justified, or something in between. Rated on a scale from 1 (never justified) to 10 (always justified).
Differences
• Plateau in USA support since early
1990s. No plateau in Europe.
• USA Catholics tend to be more
opposed, but, in Europe, no apparent
religious difference.
Paradox in USA
• Unclear why in the USA public support
increase from 1990s took to 2010s to
change laws.
• Unclear why laws in USA permit PAS
but not euthanasia, yet public support
is stronger for euthanasia.
Physician Support
• Typically fewer than half of physicians
support legalizing euthanasia and PAS.
• Physician support for euthanasia and
PAS is consistently lower than public
support.
• Physicians tend to support PAS more
than euthanasia.
Physician Support for PAD
Physician Support:
Netherlands
Have
performed
euthanasia or
PAS
Would perform
euthanasia or
PAS
Never would
perform
euthanasia or
PAS
Overall
60%
86%
14%
Cancer
56%
85%
15%
Psychiatric
condition
2%
34%
66%
0.5%
29%
71%
2%
18%
82%
Advanced dementia
with ACD for
euthanasia
Tired of living
without medical
suffering
Physician Support: USA
Metastatic
cancer with
excruciating
pain
Medical
Oncologists
Surgical
Oncologists
Radiation
Oncologists
Pediatric
Oncologists
Euthanasia
5.3%
12.7%
6.8%
13.7%
PhysicianAssisted
Suicide
20.5%
32.2%
26.5%
30.9%
Physician Support
• In all countries, surgeons and nurses
tend to be more supportive than
medical oncologists and palliative care
physicians.
Patient Motivations
• What motivates
patients to want
euthanasia or PAS?
PAIN
Excruciating and
unremitting pain.
Patient Motivations
• Pain is the wrong answer.
Patient Motivations
Patient Motivations
• If the main motivation for euthanasia
and PAS are mental health issues not
pain, what is due care?
• Is it ethical to end a patient’s life who is
depressed or “tired of life”?
What is Due Care?
• Marc van Hoey is a
Belgian physician and
President of the
Flemish Death with
Dignity Association.
• Conducts 15-20
euthanasia cases per
year.
What is Due Care?
• Simona de Moor—85 year old patient
in excellent health.
• 57 year old daughter died suddenly
after a routine surgery.
• Ms. De Moor was grief stricken.
• Treated with anti-depressants.
What is Due Care?
• Ms. De Moor wanted to die.
• Dr. van Hoey determined her
psychological suffering to be
unbearable “which would never, never
heal.”
What is Due Care?
• In front of an Australian documentary
film crew, Dr. van Hoey gave Ms. De
Moor liquid barbiturate which she
swallowed and died.
• Did he provide “due care”?
What is Due Care?
• All Belgian euthanasia and PAS cases
•
•
should be reported to 16 member Federal
Euthanasia Review and Evaluation
Commission.
If more than 1/3 of the Commission does not
think the law is complied with they refer it to
the prosecutor.
Dr. van Hoey first case in about 10,000 since
2002 referred to the prosecutor.
Practices
• Surveys of physicians. Older data.
• Best data from reports to offical bodies
and death certificate studies.
• But reports are not comprehensive. In
Belgium and Netherlands reports cover
about 70-80% of cases.
Practices: USA
• American physicians
 Ever received a request for



PAS
Ever received a request for
euthanasia
Ever complied with a request
for PAS
Ever complied with a request
for euthanasia
18%
11%
3%
5%
Practices: USA
Oncologists
Euthanasia
Physician-Assisted
Suicide
Requests during a
career
38.2%
56.2%
Performed during a
career
3.7%
10.8%
Practices: USA
• Oregon and Washington state
• No data on the number of physicians
who have received requests for PAS.
Number of
prescriptions
Number of
physicians
Percent of
all
physicians
Oregon
155
83
0.6%
Washington
176
109
0.4%
Practices: Netherlands
• 60% of Dutch physicians have ever
performed euthanasia or PAS
Practices: Europe
• Dutch Pediatricians
 Ever received request for


euthanasia or PAS
Ever performed euthanasia
or PAS
Performed euthanasia or PAS
in the last 2 years
6%
5%
2%
Practices
Oregon
Washington
state
Netherlands
Belgium
France
Euthanasia
0
0
2.8%
4.6%
0.8%
PhysicianAssisted
Suicide
0.3%
0.2%
0.1%
0.05%
0
--
--
0.2%
1.7%
0/6%
Lethal
drugs
without
consent
Practices
Oregon
Washington
state
Netherlands
Belgium
Cancer
78%
76%
76%
73%
Neurodegenerative
diseases
8%
12%
6%
6%
--
--
2%
4%
Mental
Practices
Oregon
Washington
state
Netherlands
Belgium
Age, over 65
69%
71%
--
72%
B.A. degree
46%
49%
--
25%
White
97%
95%
81% (Dutch)
Problems and Complications
• Oregon:
 Regurgitation
 Regained consciousness
2.6%
0.7%
Median time between swallowing
barbiturates and death was 25 minutes but
outer limits of time was 104 hours—4 days.
Problems and Complications
Netherlands
PAS
 Problems—eg difficulty swallowing 9.6%
 Regained consciousness
1.8%
 Long time to death
12.3%
Euthanasia
 Problems—no vein
4.5%
 Complications—siezures, vomiting 3.7%
 Regained consciousness
0.9%
Slippery Slope
• Children are now permitted euthanasia
in Netherlands and Belgium
• 15-20 infants with spina bifida receive
euthanasia.
Slippery Slope
4%
3.2%
3%
Belgium
2%
1.8%
1.7%
1.5%
1%
0.8%
0.7%
0.7%
0.4%
0.2%
0%
1990
1995
2001
2005
2010
1998
2001
2007
2013
Overall Assessment
• Euthanasia and PAS are used by a
small minority of patients. They will
never “solve” the end-of-life care issue
for the vast majority—over 95%-- of
dying patients.
• Euthanasia and PAS are not
necessarily flawless or quick.
Overall Assessment
• Most patients who want euthanasia and
PAS are not in pain and not suffering
intolerable physical symptoms.
• Euthanasia and PAS are about mental
health issues—depression, tired of
life—and control issues—autonomy.
How can we Improve End of
Life Care for the Vast Majority
of Dying Patients?
Improving End-of-Life Care
• Focus on the physician who makes
decisions.
• Require physicians and nurses
complete an advance care directive
with their spouse.
Improving End-of-Life Care
• Train physicians in end-of-life
communication skills.
• Provide physicians real time data on
their dying patients and dead patients.
Improving End-of-Life Care
• Provide palliative care at home to all
dying patients as a default.
• NO CHOICE by physicians.
• Patients get unless they refuse it.
• Create an alternative number for
patients and families to call in an
emergency. So they do not get the
ambulance-to-hospital-to-ICU suffle.
Improving End-of-Life Care
• Might provide a financial incentive for
providing optimal care.
Conclusions
• End-of-life care is not optimal anywhere
among developed countries.
• The USA is not peculiar. All countries
face problems. They differ but they fail
to achieve high quality care at home.
Conclusions
• Euthanasia and PAS are not solutions
to the problems associated with
suboptimal end-of-life care.
 For a small minority of patients
 Not necessarily quick, flawless, painless
 Mainly about mental health and autonomy
issues
Conclusions
• Improving end-of-life care requires
making proper care the default not
discretionary.